Wow Gretchen how timely your post. I have been re inspired recently to really embrace my G-Tube and not for the obvious reasons. This is a long post so I will split in two.
G-Tube Advantage
"Let food be your medicine and Medicine be your food" Hippocrates
For many years I looked at having to rely on a G-tube, to gain weight, as a negative thing. It seemed like a failure on my part for not gaining weight lazyness or just being overwhelmed with just having to deal with a chronic illness . The prevailing concept in managing CF is to eat high carb and high fats, basically throw enough crap at the wall and something is bound to stick. This might be good for calories and works for some for the enlightend health minded minority this is not the case. if you do not have the understanding of how health and nutrition are so simply woven together that in the future advanced medicine will be nutritional medicine.
Now obviously Cf is so complicated and difficult to deal with and for doctors to treat that we need both sides to dovetail together the best traditional medicine and the best nutrition if we are going to have a chance at surviving.
It seems that there are several new drugs that could really help us, I am hopeful but guarded with my anticipation. We all have been down this road before. But now I do see some more hope on the horizon and I want to stay as well as possible. Bring on the G-tube Advantage.
When I first had a G-tube placed and did tube feedings at night, within 2 years I gained almost 25 pounds. Well worth the hassle and placement. I was amazed that I gained weight but then stopped using it over the years. I got tired of having it and had it removed. I later got sick, lost a lot of weight and needed more calories so the G-tube was replaced. I used it to gain weight but still struggled with using it and the concept of using it, I had now developed diabetes and many food allergies. So finding a formula was difficult and also when I did the tube feedings it seemed to spike my blood sugars and I would feel blah most of the time afterwards. Well those formulas, while serve a need and are necessary for some, I found I had more success with my own home made formula that was based on whole foods and balanced nutrition. It has made a big difference.
The greatest thing with a G-tube blending system is you can eat anything, anything that you can stick in a blender.
In business there is something commonly called a competitive advantage, which is how a company can compete in a competitive environment, if they have an edge. A G-tube is your nutritional advantage and you can really take advantage and maximize its use for optimum nutrition. It helps you compete in the drawn out battle against this damned disease and all we have to deal with it. You can try to eat your way to success but it is so hard to get enough calories to get over the hurdle of that 3000 calories a day. If you give your body the nutrients it needs, and it can utilize them, then it will know what to do with it. (Please look at gluten sensitivity for some real insights to better health).
Do you know anyone that could eat an avocado, banana, walnut, sweet potato and tuna fish smoothie? Do you know how much nutrition you are getting? Lots balance and healthy.
The ongoing challenge is we know what we need to do it just comes down to commitment. Well now possibly there is new drugs on the horizon it is important to keep up your hope and spirits. I know we run the risk of getting our hopes up again and again but what is the alternative.
The key is doing a good thing many times not just one day you get 3000 calories you need to do it consistently and in a way that you will be compliant to yourself, regardless of how compliant you are with your other treatments. Well we have to be diligent with those too. It is all related. To run the risk of sounding trite, Nike said it best "Just Do It!"
Also utilizing nightly tube feeds supplies your body with the needed nutrients during the night, a time that you usually are not eating. Again points for the G-tub e advantage.
By making your own foods you get fresh and healthy foods, as good as you can get and you know exactly what is in there and what it is made of, conveniently made up in a blender and allowing you to bypass the arduous task of eating enough calories. This is critical if you have food allergies. And we do we just don't know it. I avoid soy, peanuts, dairy and gluten. The typical formula feeds enterral nutrition is basically dead nutrition and high glycemic. They formulate them for specific needs and they put the cheapest and nutritionally void foods in there. I know it is needed and I still use a formula but I am relying more on natural whole foods instead. I know this runs counter to the dieticians recommendations but they are just parroting what insurance and big pharmaceutical companies will support.
Again the concept is high quality, real food, no gluten, dairy or high glycemic carbs, with good fats and protein in a balanced and consistent delivery method to get the nutrients you need. The concept is quality versus quantity. If you can bolus 3-4 times per day you will get the calories you need and make a better digestive load on your body and blood sugar, this helps you get nutrients and calories. Because you have digestive problems you need to be even more mindful of nutrition and how it is paramount to surviving this disease.
The days of Pizza, Pepsis and cheese puffs are over, this is dead anti nutrition at its best. I know sounds like comfort food but this is sick food.
Look at CF from a non CF point of view. Your body requires more nutrition the right kind more than someone else. Just you can eat more crap doesn't mean you should. So to compete with CF you have to outsmart it with good nutrition. Real , whole foods and supplements. No gluten, dairy or heavy sugar, soda etc. If it is processed food it is dead food.
Food Allergies
Easiest way to tell if you are allergic to foods beyond the serious and obvious, is acne and congestion.
If you are over 25 and have acne you have food allergies. IF you drink a milk shake and are junky then dairy is a problem. If you are suffering from inflammation, tiredness, stomach problems, arthritis etc you have to figure out what foods are your friends and what are your foes.
If you bolus 3 cups of liquid you will get bloated. To start go slow it is best to successfully do 4 oz 4 times a day then all at once.
If you do it and it works ok for you, you can add more based on your needs. It is a good idea to rotate foods so you are getting a balanced diet. I make up feed formulas every 3 days and just commit to cleaning up the kitchen, ok most times, except my wife might disagree and wonder what happened in here?
Take it slow, start with a few ounces after you eat a snack or meal. Doing a G-tube bolus will make you feel full until you get use to the feeling. Remember the blending and mixing is like you super chewing the food. It is also best to bolus after you do eat some solids, you do not want to replace eating foods normally and doing the bolus after you eat ensures you do not fill up and avoid eating.
Juicing - Green juice, fruits and vegetables is an excellent way to get the nutrients you need. You can juice and drink the juice or you can get creative and juice some heavy greens and bolus it. See what kind of advantage this is?
You want the mixture smooth without any clumps, as even the smallest clump will clog the tube and make life messy. You want a pancake batter consistency, remember you don't have to drink it. Add more liquids or solids to your liking. Add all ingredients and blend well for 30 seconds or more. Adding more liquid speeds up the process. Remember you can drink water before or after if you feel full. Also take enzymes with antacids, helps the enzymes work more effectively.
Pour out into shallow and steady bowl or wide mouth measuring cup container , this makes it easier to draw out liquid with syringe and to gauge how much you are using. I use a 60 cc syringe with a bolus attachment for G-tube it basically does not have the L shaped connector, this allows a faster and easier bolus. The L connector tends to clog with mixtures with a heavy consistency and when there are small clumps. I also use a 60cc and 30cc Luer Lock Tip type syringe, it fits into the hole in G-tube just evenly and use this when traveling or what not, here you do not need the bolus tube less parts to clean and carry around. It can be a little messier if you miss though.
I do the bolus over the sink and rinse the syringe each time I draw out the liquid, this keeps things clean. I also have a paper towel to wipe up any spills. It takes a little finagling but you'll get the hang of it.
Post back if you want to talk more.
Rob
